SPAspital

SPAspital

My last post that was around 10:00 pm on Monday, the night of my surgery, made it sound like things were all going very well.  Well, at that point they WERE. It pretty much went downhill from there.  Richie left and I was happily going to settle in for the night.  Then the unexpected happened.  I could NOT sleep.  How could I be on Morphine and not be able to sleep?  Anxiety, I suppose, is a powerful thing but, I kept trying.  I kept pushing that button, and kept falling asleep for about 10 minutes. It was rough. I was pretty much up all night.  Without going into too much detail, I was not satisfied with the nursing care, and I’ve already begun to seek alternatives for my next surgery.  Someone asked me if I was having trouble sleeping because the nursing staff was keeping me awake, and I remember saying, no, if anything, it was me bothering them.  It was around 3:00 a.m. when I first mentioned to the Nurse Assistant that I had a severe headache, and that I found that odd, for someone on Morphine, and then after 4:00 by the time the nurse that was helping out my nurse came in to discuss this headache.  I finally began to blame the morphine itself for the headache and asked that nurse if there was anything else I could take instead, and she said yes, I could take the hydrocodone and just use the PCA (Morphine pump) as needed. I asked her what the usual plan/process for the weaning off of the morphine pump was, and she said “I don’t know”. Then, I began to wonder if should have been on the oral pills all along too instead of relying on the self-administration of the morphine, which I was actually trying to hold off on.  Just think how much pain I could have been in when I woke up, if I had actually fallen to sleep.  So, somewhere around 5:00 am I started the Hydrocodone and stopped the morphine.  The headache did not stop, however, until after my Mom arrived around 10:15 with my free iced latte’, and taco, and some Advil.  Free? You ask? Yes, Free! An amazing thing happened when my mom went to see my caffeine dealer at the Irie Bean coffee shop http://www.iriebean.com/  , (Raf,  sounds like Calf…his brother’s name is Ace J)  When my mom began to order my specialty drink,  Double Iced latte’, 2% milk, extra ice, less milk, Raf said, “Is this for the (bald) girl with the little boy who comes in here?  She likes it in the paper cup….”and he put it on the house!! It was awesome because I do like it in the paper cup, but I thought that was probably just one too many things for Mom to remember.   Then, Mom went to the Casita Taco next door and my sweet taco lady also guessed who it was for, and put it on the house for me as well!  Hand on chest…..Verklempt J.

At 8:00 a.m. my surgeon came in and told me the surgery went well, and that they visibly saw no cancer.  He gave me some instruction on how to care for the incision and told me that I would go home today, and to make a follow up appointment with him next week.  I was pretty out of it, so I don’t remember everything he said.  At 9:15, the next nurse came in and I asked about what time I’d go home and she said by 11:00.  I was shocked and believe I said “OH SH….I…T”.. ..I was not near being ready to get going out of there.  Then the nurse said, “Well, we will not kick you out. You can leave when you are feeling ready.”  So, when my mom arrived, I instructed her to lay low, and just stay in the room. I would not call the nurse, and we’d likely not see them until 2:00, which was about accurate.  The nurse tech did come in to take the BP, and then finally I did feel I needed to call someone to empty the drain. Should I even go into what happened next?  No, but it turns out that a liquid and gas filled rubber pocket does have a tendency to splatter when you release the little stopper. Next time I’ll close my eyes.

Since I’ve been home, I’ve been a bit more emotional than usual.  I’ve been in more pain than I expected.  The doctor had told me that this surgery was “not that painful, but takes longer to recover from than you’d expect”. (Maybe because it IS PAINFUL to the person who has had the surgery).  I was in quite a bit of pain when the surgeon himself called me on Thursday to give me the pathology report results.  The great news was that they found NO CANCER in any of the breast tissue or any of the lymph nodes.  Unfortunately, I was so busy complaining about the hospital, and then further upset about what he said next that I hardly took note of that.  When I told him that I was having a lot of nerve pain, he said that generally that decreases with time, but it could be a year, or it may never go away.  He said that he has actually had to go back and cut nerves that were originally NOT cut, on people in order to get the nerve pain to stop.  So from that statement on, I’ve been a bit in the dumps. I’ve also been perseverating a bit on, and feeling a bit angry about how much time I still have left with this treatment.  I think being in pain makes it seem even longer.  I still have 6.5 weeks of radiation, then 3 months cooling off, then, left mastectomy and bilateral reconstruction. Then, i still won’t be quite done with the Herceptin chemo.  At this point, more surgery is not sounding very reasonable.  I’m hoping that by next week I’ll be able to see the light at the end of that tunnel more clearly again.

With all that said, I’m actually feeling a bit better even as I write. (See, Blahging is great.)  I’m sitting here thinking about all the good things that have happened this week.  I have very supportive family and friends.  I already mentioned the taco and latte’.  In addition to that, and my Mom doting on me most of the week,  this week alone, I’ve had flowers sent to me by my Uncle and Aunt, my father in law, and 2 of my friends Cindy R and Jenny C.  I’ve had friends bring me food….Lisa C, Jenny, homemade spring rolls by Roberta, and people take me out to lunch, mom and Cindy R.  One of my out of state friends, Kristin T. sent me a very thoughtful care package and I received a sweet note and a gift card from my 90 year old friend, Vi.   I received get well notes from my co-workers, supportive statements on my blog, personalized supportive emails and texts, and all of my neighbors got together and signed a card and gave me a gift certificate to the local Soup Peddler.   I’ve had my Words With….. Friends, up, playing words at all hours of the night, and I think I may have won one gaim.  One of my friends even gave me the gift of an old memory with his pledge to play a “reunion” rock show, which is normally out of character.  I got to go out to the ranch on a beautiful day with my family, my son learned to pee pee in the toilet, and my husband made me an awesome dinner of grilled shrimp and those awesome bacon wrapped cream cheese stuffed jalapenos!

I got to do modified yoga once, and got to go out and walk on the greenbelt twice.  I even found a new, even closer to my home, trail entrance.

One of my good friends told me that I looked great when he saw this photo of me at my, ‘Fist Punch’,  Gus Fruh, trail entrance on my first day out after surgery. 

Not really looking great, but sporting my new “fast runner look” on the right side.

Thank you for the compliment, though. J

Oh yes, I have not forgotton about the wonderful massage that i had that was set up for me before my surgery by my sweet friend Cindy S. Or, the awesome time i had hanging out with my BFF, and at the Downtube Shifter Tube Top Extravaganza.  Thanks to everyone who came out to celebrate that day with us!

Thank you all again for your love and support, and your reminders of what keeps me treading forward.  I think next week will be a better week.

Emily

Surgery 3.21.11

3/21/11 10:00 p.m.

Hello all! 

I'M here in the hospital.  Pretty woozy so please excuse any misspellings or improper punctuation.

They say the surgery went well. I heard it through the grapevine.  

They wheeled me into the Sx room round 2:10 I was out like a light, VERY soon after that.  Woke up at 5:22 on the clock in the recovery room.    I was in quite a bit of pain initially, and I believe my first word was " ouch" or "it hurts". I was pretty grumpy because I know there are meds  that can keep that from happening.  My recovery nurse, Patti, who happened to be a trail runner, was a pretty good sport about my grumpiness, and did a pretty good job keeping me distracted.   I liked her by the end because I heard her saying nice things about me in her report..   "she's a very well conditioned person". And even said nice things directly to me " you look very cute without hair, you should leave it that way," and then referenced how Sinead OConner looked much less attractive with hair.  Well, I'll think about it.  We got the pain under control with the little button I can push every 10 minutes if I want.

In the hospital room now and pretty set for the night.  Well fed. Just got back from restroom, ice water right here, and I've already put some light postural yoga into practice.  :)

Yes, a breast does have phantom feelings, and yes, I do somehow feel lighter and potentially faster. 

Thank You all for your love and support! Goodnight now.

Emily

Words With Friends....Part Two: Run Like Hell

This Tuesday morning, I WWF’d, Scrabbled and Jumble Lite ‘d (Anagram word game …Thank you Margaret) my ass off  in order NOT to Scream, Cry or “Go Chemo” on someone..  Let me back up. 

My morning couldn’t have started out better.  I was back to my Tuesday morning running group.  Yes, I had to miss last week (1 miss out of 12 weeks this round…not bad) due to vomiting then chest congestion illness.  But, I was back with a vengeance by Tuesday.  It was great.  It was perfect weather for me.  High 40s/low 50s.  I actually ran with my old POD (that’s what I call my group of people who consistently run together) for about 38 minutes, then, I turned back, in order to avoid overdoing it.  I felt like I could have kept going, due to my increased RBC count, but knew I should not, due to deconditioned muscles and joints. So I turned, and I was able to keep the pace for most of the way back.  Total time of 80 minutes with run time of 75 minutes, at a decent pace.  No push, but not slogging.    My goal for the end of these 2 rounds of chemo was to be able to still run 6 miles on my long run.  I did do that even the last week of Taxol, but I wanted to make sure that I could still do it even after being ill for a whole week.   It was very important to me to make it this Tuesday, being the last Tuesday before my (first) surgery.  Last week, despite being ill, missing 2 days of work, my Tuesday run, and chemo, I did sneak in 2 yoga sessions and 2 very short and easy runs.  Photos of my Sunday run were posted earlier, from my phone. It was a nice run as you can see.  My 30 minute trail wolg  (Like slog but slower, closer to walking) was also very nice and, a bit emotional.  I took this photo, because I thought..…this might be the last time I wear this shirt on the trail, or even need a jog bra for a while.

But, as it turns out, I did do another trail run with Lisa at my Hill of Life ( I love that I get to run at a Place called Hill of Life) on Thursday, and another again today with Cindy R.  So, I’ve gotton to run with all my closest running buddies in one week! J.  It would have been cool if I could have made it out to Tejas Trails this week, but, I got to spend the day at SXSW with Richie J. 

After the Tuesday run, my friend Chuck had helped me plan a more special than usual post run breakfast at Annie’s downtown.   I really wanted to spend a nice morning with the people that I have been having Tuesday breakfast with off and on for the past 24 weeks.  It was great.  The core group and most of the supporting cast showed up.  Also our coach John Schrup made it and we had the chance to make a special toast to him.  I had wanted to make a point of thanking him for taking such a personal interest in his runners, which actually included me all this time, despite my inability to truly train.   I had written a little article and submitted it to the local FIT magazine a few months ago that was an attempt to thank all of the running groups I had been in over the past few years, and the recent support I have received from my current Team Rogue group.    I did finally receive an email back from the magazine and they said that they want to use my idea in August in an issue that I believe would suit the idea just right.  I won’t divulge more, in case they do end up using it.   Anyway, I wanted to thank Schrup more personally, and sooner than August, and in case it ends up not happening.  So, breakfast was great, the company was great, and I gained one more WWF Friend J.  I’ve now got 6.  AND interestingly, All 3 of the Cindy’s that I hang around with, are currently beating me.

But as they say, all good things must come to an end.  Who said that? That is simply rude.  Anyway, breakfast was over, so then I was off to the pre-surgical office visit with the Surgeon.  Dr. H. Lamar Jones.  He seems like a nice enough guy.  And, he seems like he would be good at surgery.  I don’t really know what makes someone seem good at that, but he does. I expressed my concern with the surgery being scheduled at 2:00 in the afternoon and that I, myself start going downhill around 2:00.  He assured me that those are normal working hours and he would be fine.  I said “O.K. you’re the one that matters…As long as you feel good about it.”  We proceeded to discuss the upcoming surgery and he mentioned that he recommended that we only do the mastectomy on the right side this time around.  That we wait to complete the mastectomy on the left at the time of the reconstruction.   I, initially, of course, think this is some sort of trick.  Some way, to somehow, screw me in the long run.  After he explained that it’s best if the left side only has one surgery, it made more sense.  We are only waiting on the reconstruction on the right due to the radiation.   The left side is not being radiated.  If i didn’t have to radiate the right side, we would be doing reconstruction right away.  Despite the fact that it all sounded reasonable, I still struggled with the fact that it was different than what I was expecting.  It is still very difficult for me to adjust my mindset. Even now after it’s been pounded in my head, and punched in my face, over and over during this treatment, that nothing is set in stone, or even semi predictable.  Next we discussed the sentinel node biopsy.  He said that because the original biopsy of the nodes did show cancer in the nodes, that they will need to go ahead and take out the first “level” of nodes and maybe even part of the second level, even if we did do a sentinel node biopsy, and it showed no cancer (Which it likely would, because the MRI showed no cancer).   At this point we pretty much expect that we would not see any cancer in the biopsy, but he would still have to recommend taking them out due to the fact that it was originally there, and the original nature of the cancer was aggressive.  I need a bit more time to digest all of that.  Now off to make it on time to my 10:45 chemo treatment.  No doctor visit.  Only the “30” minute Herceptin. 

I waited in the waiting room for an hour.  Played all my goes at Words with Friends and several rounds of Jumble Lite…. made it to level 8.  It's amazing the power of anxiety. Then, they called me back to the infusion room.  One more hour passed...i typed that like it came easy.... and then the nurse came over to begin to hook me up.    She showed me the meds which looked significantly larger than usual.  I asked her about the dosage and she stated it was the triple dose.  I corrected her in that I was to complete the 12^th single dose this week, since I missed last week and then start the triple dose in three weeks, as recommended by the oncologist.  Plus, I did not want to begin a triple dose within 1 week of the surgery, in case it was not the “breeze” that they have said it would be.  My predecessor at work has told me that the triple dose Herceptin killed her…..i had that on my mind as they were telling me again it would be a breeze.   I was finally hooked up and dripping by 1:15 and out of there by 2:15.  Only 3.5 hours for what was supposed to take 30 minutes.  I was only 2 hours later to work than expected.  For some of you this might not seem so bad, but for me this is torture. (Refer to control issues).  Sitting and not doing anything is very challenging for me.  Yoga is a good start, but as my friend Chuck pointed after our “very slow” yoga class that I really need to continue to learn more patience by backing off of the more intense classes and do more of this type of mind/body thing and relaxation.  OK. “Done, I said.  But really that was only because I have surgery on Monday, so I really can’t take credit for that mature choice.

As I mentioned, I’m calling this phase Words with Friends.  Initially in honor of my introduction to this awesome iphone scrabble game, but also because I wanted to take extra time with family and friends.  I feel I’ve been successful.  I’ve mentioned all the running dates I’ve had, but also last weekend I spent time with my family doing what we love best,

and this weekend spending time with my BF from high school Amy VB.  To top off the weekend we have the Downtube Shifter SXSW tube top extravaganza, where I will see many of my friends from in and out of town alike! 

Recently, during words with one of my newest (yet most mature at age 90) friends, she asked me…What are you going to do after all of this chemo and surgery?”  While I realized at that moment that I had not really had too much time to think about that, I stated without hesitation, and with strong intention…. “Run Like Hell”….and I had a Forrest Gump like vision in my head.

Surgery is still scheduled for Monday at 2:00.  Unless, something changes, or i change my mind. 

Mommy and Ace :)

Cleanse

Views from my morning jog. :)

Words With Friends

Phase II: Words With Friends: Phase III

It seems that my life has become (become?) somewhat of a roller coaster.  I have recently thought how my close friends must think, “what could happen next”, or even be tiring of the drama.  Others who know me a bit less intimately might even think that some of the things that have happened/or are happening in my life are fictitious, or possibly real only in my mind.    I suppose, even I, believe the latter to be true to some extent. 

With that said, I will recount this very odd week.

The last big news was the outstanding MRI results that I posted from my phone last Friday (3/4/11).  There is no sign of cancer at this time in either breast per MRI.  I thought it very interesting that all the men that I told these results to had the initial thought…”You’re done then….don’t go back to that place.”  I truly enjoyed indulging in that thought.  I can see it.  The surgeon and all the nurses scrubbed up wondering where the patient was. The oncologist’s office calling me months down the line to see what had happened to me, and me finally responding simply… WHuT?  What Cancer?  (Wha ha happen wuz……that chemo….it took that canca…) Despite this intrigueing idea, that 30% recurrence rate without radiation, with my particular aggressive type of cancer, kept creeping back into my mind.  Like Cancer can do.  So, I did go ahead and go back to my appointment this week.  I did, however, get out of doing the 30 minute dose of Herceptin this week merely by enduring 30 hours of puking and diarrhea between Sunday and Monday. The doctor simply didn’t want me in the infusion room with the other folks with low blood counts.   Funny how 23 weeks of Chemotherapy and months of stressful situations could not make me lose my appetite, or bring me to the porcelain God, but a classroom full of puking toddlers with a rampant virus could.

Fortunately for me, between my extremely stressful Tuesday and “Retching” Sunday Night, lied the interesting, and fun at times Wednesday, Thursday, Friday and Saturday.  Wednesday, I did have to leave work early to pick up my puking toddler (hence the horrible Sunday Night) out of a roomful of other puking toddlers, and then go spend an hour and a half with the Radiation oncologist, but Mom made a rush trip down to help us out on Wednesday night so we wouldn’t have to take off Thursday.  Wednesday also happened to be our 12^th Wedding Anniversary.  We almost blew off dinner due to overwhelming situations, but I was glad we didn’t. Richie surprised me with a gift of his Grandmother’s Wedding Ring.  It is very beautiful, and I’ve never had anything like it.  I don’t really need anything like that, but it’s true that “Sparkle” is my favorite color.  And that, it does.  It did brighten my day and my week.   I do want to note also that I do like the radiation oncologist.  When I mentioned the DIEP reconstruction surgery to him, he did say ..”are you sure you have enough there? ( on the downtube?) “you look pretty thin to me”…Some of these doctors know the right thing to say.  Anyway, after long discussion with my new friend, he said that we COULD do the reconstruction at the time of surgery then radiation but that he thinks the outcome would be best if we waited.   The next day I called my buddy Ned (Plastics) and he too said that we COULD do it, but he thought that I would be happiest with the outcome in the LONG RUN if we waited.  The fact that this guy, who I believe to be on my side, said this, along with encouragement that I received from a woman who I had the opportunity to meet this week, who is my age who and who is currently 5 years out with similar cancer and same post op reconsruction, that I should be starting to prepare for the fact that I WILL LIKELY be ALIVE in 5 years.  The ODDS ARE that I will be alive in 5 years, and she recommended I get the best reconstruction I can get, which would mean waiting.  So with all the information I felt I needed on board, I decided to again stick with the method…or, the way of the oncologist, and keep the scheduled, surgery only, on the 21^st of March.

Thursday, I got to go see Downtube Shifter play at a Parking Lot Party, but the cool part of that was watching my son eat cake and slide down a huge bouncy slide.

Friday I felt pretty good.  In the morning, I jogged for 30 minutes and had my first of what I might call a RBC (red blood cell) spurt. Only lasted About 10 minutes, but I liked it. 

 In the afternoon I got the great MRI news, then in the evening got to go out to dinner with my friends from work, eat guacamole, then go see Richie’s  Band. 

 I had a great time until about 11:00 pm when I realized I had overdone it and hurt pretty bad that evening and most of the next day. 

Sunday morning started out great again.  75 minute trail run! and tacos! with my good friend Cindy R. who is the one who introduced me to the “Words with Friends” and Scrabble on my IPhone. 

Wait, that's Ace, and that was in the afternoon. Kinda looks like Cindy from begind though.

Watch out for that Crevice son!

Anyway, I mentioned in a previous entry how my grandparents loved crossword puzzles, but I was no good at them, so I did, can’t remember what I said, but… something else.  Anyway, now I can say Words with Friends, or Scrabble.  I do suck at this too, but it is much easier than crosswords and you can still be an idiot about current events and be entertained.  And you can pretty much make stuff up, which I like doing. My whole week has pretty much been “Sprinkled”  (Think… sugar cookie candy balls, or sparkly colorful sugar…) with this new found addiction.  My favorite is to have a little time with the words with my morning coffee.  (Oh my god, I AM my grandparents). Anyway, the gift of this simple time passer, or mind blocker has been more helpful for me in the past 2 weeks than Cindy, or anyone might be able to know.  So, in memory of this special gift from my friend (and some of you think I am being fecicious sP?   But my friend Cindy knows I’m being serious)…I’m going to refer to this extremely difficult period between phase II and Phase III (Surgery) as “Words With Friends”.  Due to this, I’ve made it a point, also, to share a few extra words, or moments with some of my friends, prior to phase III.   Wanna Play?

Just ask for a game with Powerhowell.

I just got my MRI results. No suspicious mass found in either breast. None. No Cancer. Plan stays the same. Surgery, radiation, reconstruction, 50 mile trail run. :)

Phase II: Round 11 "I'll take the Zero, Miss"

Phase II: Round 11  (Taxol Done-Herceptin only)  “I’ll take the Zero, Miss”

Tuesday 3/1/11. 

Today was indeed a test.   In school, I used to like tests…I was pretty good at them and it was often like a game for me.   97 average in high school, Magna Cum Something, in PT school.   Most who know me also know that I DO enjoy a challenge and often set myself up that way.   Today, however, I think maybe it’s enough that I made it to class, and stayed to listen to what had to be said.  

Monday afternoon I found out over the phone that my last Taxol treatment was likely done last week. Number 10 of the original 12 planned.  The doctor decided to discontinue based on the neurotoxicity that I was experiencing.  Stopping made me happy and scared.  I was determined to make the point that it was their decision.  I don’t want my own blood on my hands.  

I was instructed to schedule an MRI as soon as able, and then go ahead and come in to my Tuesday doctor’s appointment to hear the plan for further treatment. This plan was to be based on meetings between the Oncologist, the Radiation oncologist, the Breast Cancer Specialist, and the General surgeon.  (They left my buddy plastic surgeon, who is, I believe, on “my side”, out of the loop, which I thought was rude.)

I scheduled the MRI for Wednesday morning at 6:30 a.m. and I showed up on Tuesday as instructed (after my glorious weekly 6 mile Tuesday group run and breakfast.)

Cindy S. and Chuck....who are WAY faster than me,but still run with me :).   AND the ones who got me into YOGA.

The nurse who accesses the port came in, stabbed me as usual, took my blood, and taped on the syringe where the chemo goes.  The Nurse Practioner Sara, who I like, came in to prep me with the bad news.  They had decided that I would definitely have Radiation Treatment due to the original size of the tumor (which was between 5-7 cm) and the aggressive nature of the type of cancer.  I would have bilateral mastectomy within the next 3 weeks, then radiation daily (5 days a week) for 4-6 weeks. I would then wait 6-9 months for the surgery to heel and to see if the cancer seems gone, and THEN plan the re-construction. This all would basically mean extending the course of treatment/surgical plan by about 9 months to a year.  I was very disappointed, because I had had in my mind that we would be able to do most of the reconstruction at the time of the surgery, thereby saving myself a surgery, minimizing a delay in return to life as I’d prefer it, and protecting my vanity.

After this punch in the stomach, as I was sitting in the infusion room for over an hour, crying non-stop, waiting for my 30 minute dose of Herceptin, I began thinking horrible thoughts.  What crazy thing should I do to cause harm to myself, sabatoge my existence, and make myself hurt with physical pain.  I felt I could handle that.  This pain was not physical and it was too difficult to bear.  Everything I thought of though, would only hurt someone else.   Then, I thought of how much this has already hurt my poor husband, who is the last person that I want to hurt ANY MORE.  While I’m sitting there crying and devising schemes for increased personal physical suffering, I also begin thinking……this is a critical moment.  These are the moments that make us what we are.  O.K.  I am pathetic….  I’m sitting here crying while this cute little bald girl is across from me smiling, hooked up to that godawful shit and having a normal conversation with a nurse.  Am I?  I can decide now.  This IS the only thing that I do have control over today.  How I decide to deal with this information.   So, I decided to just let this one go.

“l’ll take the Zero, Miss”.  I’ve always had fond memories of that statement that I heard more than a few times in French class in high school. I never did take the zero in that class, but always got a kick out of it when other people did.  There’s just something so liberating about that.  I’ll take the Zero.. I choose to take the zero, and I’ll be OK.  I could yell out any number and you’d write it down….but, I’ll take the zero. I'll let it go.

Thursday 3/3/11

So now, after the MRI, another appointment/consult with the Radiation Oncologist, a phone conversation with MY PLASTICS guy J,  and days of waffling back and forth, the plan sticks.  The Bilateral Mastectomy is scheduled for Monday March 21^st at 2:00 with no immediate reconstruction.  3-4 weeks of recovery, then 6.5 weeks of 5 days a week radiation.  Then, a 2-6 month “cooling off” period, per the plastic surgeon….i’ll just go ahead and call him Ned... and then the DIEP reconstruction.

One Point for “the Method”.  Zero to the home team “Control Issues.”

Did I say Liberating?